October is a important month for me and my family.
October is Spina Bifida Awareness Month. While I try to spread awareness throughout the year- I try to limit my biggest educational posts about it to this month so as not to over do it.
I think most parents to little ones with Spina Bifida remember their Diagnosis Day. I know I still remember ours.
I was 18 years old and 32 weeks pregnant. I had recently switched from the backwoods OB/GYN in the town I lived to Obstetrician in a nearby city. My best friends mom drove me to my appointment since I didn't have my license or a car.
I remember going into the ultrasound room and excitedly watching my little one on the screen. I didn't notice really that the ultrasound tech was quiet. Not until I thought about it later. It was my first pregnancy and I was 32 weeks pregnant- I didn't suspect anything might be wrong.
I do remember her leaving the room and coming back to tell me the ob/gyn wanted me to come back in an hour. I thought maybe it was because it was my first appointment- that it was standard procedure.
I was 18. I had no clue that I should be nervous. No clue something could be wrong with my baby girl.
I still remember the doctor pronouncing it wrong- apologizing that my daughter would have "spinal bifida." I remember her telling me I'd have to go to a city further away to have Kasey. I remember them escorting me out the side door so I wouldn't scare all the pregnant women in the waiting room with my tears.
I remember my best friends mom coming home with me and helping me tell my dad what was going on. Calling my closest friends and crying- wondering how I was going to protect my child after birth when I wasn't able to protect her inside my womb.
It was one of the scariest times in my life. My friends didn't know what to say. They were teenagers themselves.
The next day I went to the MFM specialists. They did some intense ultrasounds and then I was sat down in an office with a doctor who told me the worst case scenario. AT the time, I didn't realize it was the worst case scenario. I was young and didn't realize that doctors wouldn't be giving best case scenarios.
He told me Kasey would have no quality of life. That she would never be able to get around the house on her own. She would be a "vegetable." She would have clubbed feet, etc. (He was so wrong but.. that's an entirely different story).
A week later, insurance called and said SURPRISE- you get to go to a hospital 3 hours in the opposite direction for the birth and NICU stay.
My c-section was scheduled for August 4th- I went into labor on August 3rd.
I remember the first time I got to kiss Kasey on the forehead- right before they whisked her away to the NICU. I didn't have my glasses on and was laying on a OR table scared out of my mind. She had the sweetest little forehead.
I didn't get to see her again until the next day- but my dad went to see her and came back with tears in his eyes. He told me she looked like a little angel.
Originally we had been told she would be in the NICU for a month or longer. 10 days later and 2 surgeries later- we went home. There were times in the beginning that I felt that the SB diagnosis was the end of the world.
Eight years later? I know that a diagnosis of Spina Bifida isn't the end of the world. Life continues on. Kasey does have her struggles but she's not a vegetable. She has a good quality of life. She has friends, plays sports, and some awesome siblings.
She talks about makeup, who she wants to marry someday, how many kids she wants, and all kinds of girly stuff. She is the reason I am who I am (and I like to think I'm a decent adult). She is a rockstar.
So yeah, I guess you could say that SB Awareness is a big deal to us. Too many doctors and other people think that SB is a death sentence or the end of the world as they know it. They obviously haven't met Kasey!